iheartcats

Well, I thought something was up and couldn't figure out why only one half of my upper lip was somewhat swollen. A few Benadryl later and nothing changed and it only hurt more and stayed puffy. I took a good look (and poked more than I should, I know, I know)...and I think it's a COLD SORE. I've never had a cold sore in the middle of my lip. I think I've had one here and there over the years in the corner. But nothing like this one right smack on my upper lip. I bought some Abreva and don't know what else to do. I have to get this thing down and it hurts. And I'm not sick with a cold/flu...any clues what causes one of these things to pop up?

I think mine took about a week for me to really notice a benefit. Now without my Propranonol I am very dizzy and tachy. It has lowered my heart rate and made me feel less anxious. I know if I am late for a dose I start to get tachy and take it and it calms down in about 30 minutes. But at first I think my system had to adjust. If this Beta Blocker doesn't help - can you try a different one? I know your doctor sounds somewhat difficult to work with (can you see an EP or Cardio)? For me, I know finding the right one is just as important as the right dose!

I have the blood test order for this now - but...will my Beta Blocker/Midodrine interfere with it? Does anyone know? I'll email the nurse but I know that'll take days, but I won't go until I hear from her. But. I hate to go off my BB! Feel like you know what.

Xanax didn't do much for me for a very stressful situation I had to deal with a couple years back. I only felt slightly zombiefied (but that could've been from the stress plus the side effect of drowsiness from Xanax). But...I really don't think it helped. I threw them out after a while.

I'm glad you are hanging in there and doing what you can for the kids. I assume they are a bit older being in baseball and things? And it seems you and they like their Nanny so that's wonderful. Don't feel bad about a Nanny! So many people have them...and it sounds like your kids are in school and have activities so at least they are old enough to have their own things going on and it's not like you are leaving a toddler with a Nanny all day. You are sick. It's not your choice! And...you can choose your friends but not your family. It is frustrating your mom and ex wouldn't come to see you. I always tell myself that someone never knows what could happen tomorrow (and this was before I got sick, I tried to be understanding). Sometimes some people will never understand. A hospital is not a fun place to be (ha ha on the spa comment here - so true!). It's kinda like the 'jealous' coworkers when you are out getting treatment/sick/etc. Yes, I wanted to be out for 2 days for major blood tests and things. Sigh. Well keep us updated! We care! Hope you are off to Vandy soon.

Jeff, Thank you very much for coming here and sharing this information with us. Your video really hit home (only someone with Dysautonomia could describe it so eloquently and accurately!). I'm sorry for your loss. And I am sorry that you and others in your family deal with Dysautonomia. The news about your sister jumped out at me so much because I get very frustrated when media/others jump on 'what someone had in their medicine cabinet.' I do not like taking the list of medicines I must take to live a semi-functional life, but I have no choice if I want to live my life to the fullest I can. I feel there is a reason these medicines were created and that reason is to help people live and enjoy their life, friends, and family. Dysautonomia affects everyone so differently that there isn't a one-hat-fits-all treatment. So thank you for getting the word out there. This must be shared and people must learn that Dysautonomia is real and that many deal with this illness everyday.

Congratulations to you and baby!

I did appreciate how he explained it. He really hit it spot on - more so than any medical video I've watched. It just made me very sad because you know people just brushed him off (like many of us) for years. And people don't think you are 'really ill' and the looks one gets from saying how much worse it is if someone with POTS gets the flu/cold/etc. People expect you to push on like everyone else. But he did say you have to push yourself and live your life, and I try to do that. And I know Brittany looked very thin and we'll never know if it was from trying to fit in with Hollywood or simply just not having an appetite due to some kind of Dysautonomia. But I would assume being underweight cannot be a great thing with a chronic illness. Underweight is a medical issue too - just not overweight. It is bizarre how people don't tend to realize that. I am glad her brother is trying to get the word out. I still bet there a a LOT of people with Dysautonomia who are put on antidepreesants or benzos for 'depression and anxiety' or told it's all in their head.

Thanks for clarifying. I know I always get my flu shots as I don't want flu leading to pneumonia (bad for anyone with an underlying condition and not a good thing for anyone to have). I feel sad for the girl. It is a tragic thing. Pneumonia is nothing to ignore.

I usually do not pay much attention to things like this (I have enough of my own things to take care of) - but I keep hearing about Brittany Murphy and Dysautonomia and it being a 'possible' cause of her death. Her list of medications included some things people with Dysautonomia might take like a Beta Blocker and anti-anxiety drug. I personally have been told Dysautonomia won't kill you/isn't life threatening/can be debilitating but not deadly/etc. But people keep forwarding and sharing and telling me about this. This is a video of her brother mentioning it (starting at about the 4 minute mark). What do you guys think? Things like this get brought up in the media and you can imagine a friend or family member seeing it and being - "Hey! Have you seen this? I didn't think POTS was life-threatening!"

Take care of yourself and I wish you well. I was rear ended in December (no long-term injury thank goodness), but it was still stressful dealing with insurance, car rental, car repair, etc. I very much understand what you are going through. I am sure you are doing this - but keep a folder/binder and keep it and all your notes together. This allowed me to get through everything with minimal headaches. I am glad you are "OK" - I know you probably aren't feeling great but it sounds like you are handling things/improving. *HUGS*

Propranolol was not in my first-line of treatment, but I am on it now. Tachychardia was an awful symptom for me - mine would go crazy. 160s walking around and up. I also often feel 'over-stimulated' even though I am not. So it has really helped me. I did have a breathing test first. I passed, so they felt that Propranolol would be OK. Have you had a breathing study? They did it as outpatient and it was not too bad. I just wanted to make sure there was no asthma as I have allergies. Now allergies and BBs are a different thing - and personally my benefits outweigh the possible side effects with allergies. I paid for a food allergy skin test first (was that a fun bunch of money to spend) and it was negative to give myself more peace of mind, if that makes sense, since I get random hives. Aren't POTS people fun to treat?

Since they think I might have Celiac Disease, I've recently gone off Gluten. I think I'm feeling a bit better/digesting a bit better. Maybe it's because I do have Celiac Disease, maybe it's because I'm trying to eat healthier or am getting less sugar spikes by not eating my white bread/danishes/sugary cereal/whatever else I used to eat that wasn't so healthy. It is hard when you are told not to eat this or that - I very much understand! I was upset for two months and put off being gluten free because I had to learn to cook news things. I had the certain foods I liked that were easy and went with those. I've thought about seeing a nutritionist, at least for an appointment or two, to see if there are other menu options I've not considered. I wonder if this would be beneficial for folks like us?

Thank you, Janey. I appreciate you sharing that with me. I am having a hard time coming to terms with these feelings over a career - I never knew it meant that much, but it does. Until you aren't working or aren't working at the level/career you SHOULD be, you don't realize how much that defines you in our culture. I've noticed the different treatment, too. All I can do is hope things improve and work toward that goal. It is so hard without much support, though!

I wish you well - that had to be so painful and scary. I'm glad your family was able to get you to the ER. Please take it easy and 'wet wipes' are your friend. Or even baby wipes! They've been lifesavers for me sometimes (they make them for your face, too!).

lieze - It is difficult, isn't it? Having to make a change? The plus for you, I guess, is you are ready to move on. I think I somewhat liked the marketing/advertising world but to have the kind of position I REALLY enjoy in that field requires too many hours/too much travel/too much schmoozing. A desk job is still OK, I think I can handle that and it's what I'm looking for now. I just did it for two years and was sometimes very exhausted, but I managed. I cannot imagine running around like an LPN. I have family who are in nursing and it's a hard job. And nursing homes are very sad. Thank you for telling me not to focus on my age. I seem wound up in that lately. I guess I didn't expect to get POTS during this prime time of my life so it's very sad for me. sue - I am going to check into substitute teaching. I never even knew that was a possibility! At least it is some income and I can see how it goes. Of course I know how kids treat substitutes - we were all kids once! LOL But, it's a good think to test the waters. I tell myself I can't be the only person with a chronic illness to have to look into changing careers and/or not be at the level I'd hoped. (Of course then I look at Stephen Hawking - look what he is doing!). I will do the best I can and hold my head up high in interviews. I wish such an emphasis wasn't placed on age. There are reasons people may want a job with less responsibility, but you are often written off as over-qualified.

This is all very interesting. I know my grandmother was pernicious anemia. She still gets monthly B12 shots to this day! I wonder if I should bring this up to my PCP - is there an easy enough way to check B12? I have been eating more meat (I prefer being a vegetarian but will only eat chicken/turkey now because I pretty much have to at this point). One would think things would have to be related - B Vitamins, Autoimmune issues, Celiac Disase, etc. There are enough of us here with a mixture of issues. I hope someone has a breakthrough and ties things together. Until then...I'm sitting here worrying if I'll develop a full-on systemic autoimmune disease leaving me ten times worse off than I am now.

I'm very down because I can't find work - I am looking for full or part-time at the moment and the job market is so awful. And it is even more upsetting the market is so bad knowing work will take all my energy, but I don't have a choice right now. This is a sore point with family. I know I need to try to work (income!). And my career is in stalemate. It wasn't exactly where I wanted it pre-POTS but things were OK and I was on track and slowly working my way up. Then POTS came and as many of you know, you cannot grind away like you used to at work and get ahead. So I had to be content with the position I had and did it well, but wasn't pushing for management. Now I just cannot find anything. I'm at a stage in life where I should be really moving up in my career, managing, getting somewhere. But I can't find a job comparable to what I had a year ago! I am sad, embarrassed, and depressed about this. The jobs I am applying for are jobs people 5-8 years younger than me are going for...it's so disheartening. Then you wonder when you go to interviews are they thinking, isn't she kind of 'old' for this level? What has been going on the last three years or so? I try my best. But you can't hide who you are in an interview. I'm not 26 anymore. My PCP suggested a career change if I can handle it. The only other career I've thought about (and this was before POTS) was teaching. I was strongly considering a PhD in History (I even knew the specific time period and subject matter but POTS threw that one out the window). Now I'd be happy teaching High School History/Social Studies/Etc. But that requires an MA/Teaching Certificate and I am trying to look into it but am OVERWHELMED. At least teaching would be fulfilling to me. In the meantime, obviously, I need to find work. And I don't know how to explain the couple of big gaps in employment and why I am 'older' than other applicants. How did things come to this, I ask myself.

I went to the Rheumatologist today - I didn't get to ask everything I wanted as the office was behind and it was rushed (not usually like that or I would have taken notes with me!). My Doctor does not think it is Lupus so I hope that is the case! I am mildly positive for Sj?gren's Syndrome but am having no real symptoms yet. I also have a positive ANA which can go with Sj?gren's Syndrome. It is something I just have to monitor and see the Rheum in 3 months. I tried to do a lot of research on Sj?gren's Syndrome and hope, if I do have it, it limits itself to the more normal dry eye/mouth/skin etc. version and doesn't go systemic! I hate the waiting game, but there is not much we can do, is there? Just hope it doesn't progress. I have to have a Folate test. I may not be processing Folic Acid and B12 properly, per some test or another so we'll see what happens with that. I do have to start a multi-vitamin and can always add extra B-12 and Folic Acid, if necessary. I don't know what this says about POTS...but this sounds like stuff that could just exist if I had POTS or not. While not completely normal, I feel it is more run of the mill than POTS. Yet you wonder if things are tied together. I tested positive for Celiac twice...elevated levels...so am now off wheat. Research I've done on that ties it to other autoimmune issues and malabsorption problems. There IS something going on Autoimmune. But it can't be pinpointed. I'm frustrated, but have to make myself try not to dwell on it.

It does make me wonder. I was actually sitting down folding some laundry when I had my bad one. I tried to stop it from basic breathing/relaxation techniques but nothing worked so I had to call 911. The EMTs couldn't get it down so they threw on the sirens and the ER doctor had to give me medication to reboot it, as I say. I had an ablation a couple months later and haven't had a 'stuck' SVT. Just the fun POTS!

I had an SVT more than two years before I had real POTS symptoms I noticed. My heart got stuck over 250 one day for no reason. Just 'stuck.' My EP says he's fairly certain the ablation didn't make things worse/cause things as he's done a lot of them. My original issue wasn't POTS - my heart just got stuck and I remember feeling it flip and just not get back into the right mode, if that makes sense. It was super fast but steady. Still at 260 and stuck you can't really move much, breath, etc.

That is so frustrating they want to call in a Psych evaluation! How irritating! I feel for you. It's really irrelevant to what you are dealing with right now. Hang in there and stick to your beliefs. You know there is something physically wrong. Get an advocate like Julie says, if you can. I hope you get transferred to the other hospital ASAP!

I used to take Nasacort for really bad allergy seasons, but now my insurance covers Flonase-generic so I have to switch for the next allergy season. Overall I'm told they are similar and very localized. Nasacort never bothered me POTS-wise. I assume Flonase-generic will be the same. But. It's nice to not be constantly stuffed up with headaches!

I actually said Yee-Hooo to this. LOL But the regime helps me and my POTS. They tested me for Masto (don't have)...and they don't THINK I have MCAD but...the regime works! (At least H1/H2 at the moment). And I have the most random hives. So I'm there. Thanks and I'll be looking forward to the survey.

Not sure if I have this form of POTS - but it sure feels/acts like it. I take Propranonal and Midodrine and they really help. I also take Mestinon, which helps a little in the energy. I'd prefer more energy/less fatigue too so *listening.*